Tuesday, October 09, 2012

The Daily Battle

I was thinking (again) today about how every single thing I do every single day is such a struggle and requires such a huge effort of will. No one else - not even the people closest to us - could possibly understand what it is like for us, how every moment of every day is such a battle and requires so much effort.

Getting up in the morning is a battle. I actually sleep quite well, thanks to medications to correct my sleep dysfunction, but I am still never ready to get up in the morning. I force myself up out of bed, thinking of all the things I need to get done.

Getting up from my nap each afternoon is an even bigger battle. By the time I lie down after lunch, I am usually completely exhausted, even if I slept a solid ten hours the night before and wasn't very active in the morning. I need that nap; it would be physically impossible for me to keep going. And it does help. But getting out of bed after I wake up is excruciating painful. Only the thought of needing to pick up my son or whatever else I need to do that afternoon finally propels me up. Some days, like today, I feel as if my entire body has been filled with wet cement while I slept, as if my limbs literally weigh too much to lift them up off the bed.

Getting up off the couch to make dinner every evening is a huge battle. By late afternoon/early evening, I am completely worn out, in spite of the nap (it's even worse without the nap), but I know I need to feed my family, so I force myself to get up and get moving.

Getting up from the table after dinner to help clean the kitchen is a battle, but I know my husband hates doing dishes, so I try to help as much as I can.

And every single step in between, all day, every day, is a battle, a struggle. Just trying to find the energy to keep going each day, to do the minimum of what needs to be done, is exhausting in itself. And I'm one of the lucky ones! I'm fairly well off (in CFS terms), thanks to 10 years of tirelessly searching for effective treatments (and finding some!) I know there are plenty of people with ME/CFS who are much worse off, who literally can't get out of bed or off the couch, who couldn't even dream of making dinner for their family.

And yet, the Social Security Administration thinks I could work full-time. That is so crazy, it is laughable! I saw that one of the early reviewers of my SS disability application misunderstood all the diary pages I included, with ratings of how I felt each day. On average, I am somewhere around 2.5 on my scale of 1 to 5 (one being good; 5 being badly crashed), so they concluded I feel good most of the time. So, I compared my own scale to the one that Dr. Bell developed for measuring disability. My 1 (i.e. very good) is about a 55 on Dr. Bell's scale - that roughly compares to being able to do 55% of what I could do before I got sick...and that's on my best days (which are rare)! I often think that if a normal, healthy person woke up feeling the way I feel on a good day, he or she would decide to spend the day in bed. There's no way for a normal person to understand our daily struggle.

But life goes on...and so do we, struggling and battling every hour of every day just to do the minimal basic things we need to do to get by. There is no energy left for cleaning or lawn work or organizing closets or painting a room or any kind of home improvement (or most other activities) whatsoever.

Most days, I am grateful for the limited energy I have, and I face each day feeling positive and ready to do what I can. But some days, like today, it all just feels like too much effort, and I wonder how I can possibly go on and face another day of constant battles. I just want to crawl into bed with a stack of books and take care of myself.

But, as I often repeat to myself (as many times as necessary) at the end of rough days like today: Tomorrow is another day. And I will start again and somehow find the will to pull myself out of bed and do it all again...somehow.

One of my favorite quotes (no idea what the source is - I saw it on a plaque in a catalog years ago):

Courage doesn't always roar.Sometimes courage is the quiet voice at the end of the day saying,"I will try again tomorrow."

18 comments:

This is one of my favorite quotes too...it applies across the board for so many situations. The heavy cement description is good. With all you manage, Sue, and your great attitude, I don't think I realized what a challenge each day is for you.

Thanks for that last line, Renee - it helps so much just to hear someone say that.

Most of the time, I really am grateful for what I have; I know there are so many others with CFS worse off, bedridden or housebound. But sometimes that constant struggle (with very little being accomplished to show for it) just gets to be too much.

so well said sue - well well said - the mornings are always the worst for me - i started a new mantra when i wake up feeling so awful - this is not me - this is the illness and i try and separate a bit so i can take those baby steps love the courage quote - thanks for it. xo heather

And I don't think the Social Security stuff helps. One, it draws attention to all you can't do, since you have to list that stuff on your application it brings it all very much to the surface. And two, it's hard being so limited and having something you need denied to you by those who don't understand, don't care to understand, etc.

At least you know that pretty much everyone has to fight social security and that getting denied initially doesn't mean you won't get approved eventually. Keep fighting and try to not let it get you down in the process, I know it's much easier said than done. Tomorrow is another day, like you said, and I hope it will be easier.

You are so right about the Social Security process. I had put it out of my head for the past year while I was waiting for a court date, but now that I have one (in Dec), I can't stop thinking about how on earth I can prove how I feel. It is all such a humiliating and dehumanizing process - to have to try to prove how disabled you are while their reviewers keep saying you can work full time.

Ah, I feel your pain. Going through that disability process was so humbling (and a lot worse things). My GP at the time who had only seen me a few times wrote that I am generally a 6 or 7 out of 10 which almost lost it for me. According to my specialist's scale at the time 6/10 WAS disabled.

I hear you re: struggling with every moment. I do find, like you say, sometimes it is just breaking the inertia after a rest....when we feel so awful and exhausted.

May I just say you a very good writer. So often you put to words these struggles, both physical and emotional, so adeptly.

You bring up a good point - even with a great doctor, they have no idea what our daily life is really like - they see us once every few months. And I have told my doctor that certain treatments have helped - like Imunovir, LDN, and beta blockers - so that gives her the impression that I am doing better...and I am, but "better" is so relative for someone with CFS! It means I don't need to lie down ALL day anymore, just periodically through the day.

You're right Sue :) You are at one point on the Earth and I am on another thousands of miles away but your thoughts are the exact same as mine.

Yesterday I thought '...if a normal, healthy person woke up feeling the way I feel on a good day, he or she would decide to spend the day in bed. There's no way for a normal person to understand our daily struggle': almost word for word

I am more fortunate than you in that my OH and I share the cooking, the clearing up, (we have a rule that, if at all possible, whichever one of us cooks -- the other clears up and stacks the dishwasher), the cleaning etc but even so, the rest is the same. The thing that keeps me trudging along is the need to look after the family.

The Social Security stuff is the same too. As you know I've already done all that so I really feel for you and hope it comes good xxx

Oh, perhaps I wasn't clear in this post because I was in such a fog when I wrote it...

My husband DOES do a lot around the house. He does dishes every night after dinner and he helps with the cooking when I ask. It's just that I know he hates doing stuff around the house after working a full day and resents it, so I try to help whenever I can. And during the day I am on my own - often with at least 1 sick kid at home - so I am doing everything during the day.

Let's face it - CFS isn't fair for anyone - the patient, the spouse, the kids...

Sue, I had not seen that quote. It sums it all up very well. I am resisting getting back in the bed today trying to work through the fatigue and fog. Thankfully, I have recovered so much that this kind of day is not my norm, but when they happen all the old feelings flood back into my mind. I am grateful for your courage to write and share even on a bad day. Blessings to you.

I can really relate to this post Sue! I often wish I could give someone else all my symptoms just for a couple of minutes, so that they can understand. But reading your post reminds me that there ARE other people out there who know how I feel, as you just described my daily struggle perfectly! Staying positive is definitely a hard task in these circumstances but I think you do a great job & you're very inspiring to other CFS sufferers :)

Sue, I'm also smack dab in the middle of this place you describe so well. And afternoons are a killer for me too - that deadly mid-afternoon time, oh! Sometimes I take prescription (opioid) painkillers just to have a small holiday from that wet-cement fatigue pain, but one can't do that on a regular basis.

So the other day while I was crawling in bed for a lovely afternoon nap the notes to an old Barbra Streisand song came to mind, but somehow the lyrics got a little tweaked in my slightly off-kilter, but easily humored brain. Here, for your enjoyment--or not--is my newly written chorus to the tune of "I am a Woman in Love":I am a woman in bedAnd I'd do anythingTo get back into my worldAnd be active againOn this hope I'll dependOver and over again.What'll I do?

I gave me a slight giggle, and I truly hope it does the same for you. :)

Love it!! I do that all the time - bits of songs relevant to my current CFS situation will float through my head. Many nights, when we turn out the lights, either my husband or I sing, "Hello darkness, my old friend..."

Sue, Hang in there with SSDI. It took me 3 turn downs (one time they said I could work and I was in a lengthy stay at the acute care ctr due to weakness), but I have since won and receive my benefits. The process took 2.5 years. My best to you and your family!

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.